Cheryl's story
My story started with a phone call from another hospital team with whom I had recently had an MRI asking me if I had ever had any problem with my jaw. Yes! How did you know?
For a year or so I had what I now know to be First Bite Syndrome. I had also been to the dentist with difficulty opening my mouth. Something just wasn’t right but it was explained away as a locking jaw issue and I was to use lavender oil to relax the muscles in my face.
On the unrelated MRI it had shown a mass in my jaw. Found entirely by chance but how lucky was I that they found it! After a fine needle biopsy, it was confirmed to be Acinic Cell Carcinoma in the deep lobe of the right Parotid.
Within 5 weeks I was in surgery. The lump was removed with a total parotidectomy and neck dissection to remove the nodes. Unfortunately, the mass had engulfed the facial nerve and despite hours longer in surgery and the surgeon consulting with other specialists, severing the facial nerve was unavoidable. I am told that they discussed a nerve graft but needed to check it had all been removed before they could proceed. Waking up and realising I couldn’t move half of my face was a shock but at the time it was just one more thing to get my head around.
The results came back a short while later that there were still cancer cells to remove so 4 weeks later, I was back in surgery. They had to remove some more of the nerve that had cancer cells remaining and to access that they had to drill into the base of my skull. While I was there, they also carried out a nerve graft.
After the second surgery they confirmed that there were no cancer cells remaining and I wouldn’t need any radiation. The nerve graft was in place and next came… being patient.
Possibly the hardest part of everything I have been through! It is easy to be very pragmatic when you are dealing with appointments and surgery, but when it comes to keeping your spirits up and getting back to ‘normal’ when you still can move your face, that is really tough.
At the moment, I regularly see an Oculoplastics doctor to keep an eye on my eye health because I can’t blink. I also can’t smile. I have to put drops in my eye during the day and tape it closed at night to stop it drying out. Progress is slow but I can now scrunch my nose slightly and I am getting some tiny movements in my mouth. Hooray! The nerve graft must be starting to work! I am 3 months post nerve graft surgery and I have been told that 6-12 months is realistic to see improvements. Its going to be a long road ahead, but I am on it and on my way.